Boycott Autism Speaks

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Thank you that was a very informative article about how the Autism Speaks organization..incorporates the input of Autistic Adults into the decision..making process of the goals and initiatives of the organization...

There are many people on the spectrum..who are involved in charitable walks..and have a voice at these events...

While they might not be 'big' personalities..on the internet..facebook..blogs..and such as that...

Their faces are identified and lauded for their efforts to help people across the spectrum..in the various local event pages that promote the charitable walks....

There is a whole world out there..outside of the internet..that folks with autism ..who are not into social interaction on the internet..participate in...

Many Autistic people are visual thinkers like i was ..before i lost effective use of my eyesight...

They are more likely to be involved with behind the scenes efforts..not in some ASAN spotlight..a prolific blogger..or a Facebook administrator...

And they are there simply AS that evidence is documented on many sites associated with Autism Speaks around the country..as the organization does laud the efforts..and the contributions of time and work that these folks on the spectrum lend to help the bigger world of Autism..that YES does consist of Approximately 3 Million folks on the Spectrum...

So...so...so..so...many more than a few thousand online folks...at most.......who tally in their voice..and opinions...in this drama..that exists no where in the real world of literally millions of folks on the spectrum..out there in the 'REAL WORLD'..THAT IS THREE DIMENSIONAL WITH FULL HUMAN EMPATHY AND ALL OF THAT.....TO TRULY MAKE THINGS MORE POSITIVE FOR FOLKS..IN THAT REAL WORLD THAT DOES EXIST...OUTSIDE OF PLACES ON THE INTERNET...

But again..thanks for that informative LINK.. IT IS VERY POSITIVE..AND LOOKING UP..AS FAR I SEE...

Well I find it very bizzare and cringe worthy I don't even know what to think or feel . It gives me a headache.

I guess then real issue with asan it that autism speaks is so well known and popular that most people have no idea the asan even exists.

Yes, it is the only disability fundraising organization in existence that excludes the people with the disability that they are raising funds for. The only one. All the others were founded and run by people disabled with the condition that they are raising funds for. Not by their parents, but by the actual people who have the condition.

Autism Speaks doesn't speak for autistic people and it doesn't help autistic people. It's a totally bogus fundraising organization run by scammers who are using the money for their own self interests.

Why autistic people don't like Autism Speaks

NO you are incorrect..the Autism Society of America..is the longest standing Autism Advocacy organization in the United States and it was founded by a parent and a scientist who had a child on the spectrum...

Friend..this is the internet age..conspiracy theories like this don't hold water...when facts are easily available at the fingers of the every day JOE..

And NO Autism Speaks does not exclude anyone from participating in any aspect of the organization...But they cannot make anyone participate if they do not want to..just as John Elder Robison..made his own personal choice to no longer participate on the science advisory board..

The organization..has a number of employees...on the spectrum.. who are most definitely employed there..and many volunteers on the spectrum..who happily assist in volunteering making the walks for donations...the best ones to date yet....

I do know some of these individuals..i suggest you do your research friend..before presenting falsehoods...

Your imagination is yours..but it does not change the documented evidence or facts..again..easily available at the finger tips..for anyone with access to Google....

http://en.wikipedia.org/wiki/Autism_Society_of_America

Dude, I don't know about others here, but I'm getter real tired of reading your endless BS in support of Autism Speaks. You have no clue what you are talking about. ASA has autistics on their board. Autisms Speaks does not, and will never have, because they don't even respect autistic people.

Lars Perner, Ph.D., Secretary, PSA Chair
Past Board Member, Autism Society of Los Angeles

Lars Perner is an assistant professor of clinical marketing at the Marshall School of Business of the University of Southern California. He holds a Ph.D. in marketing from USC and an M.B.A. and B.A. in political science and psychology from the California Polytechnic State University, San Luis Obispo.

His main research interests center on consumer behavior, non-profit fundraising and “win-win” deals. Dr. Perner became interested in the autism spectrum after being diagnosed with Asperger’s Syndrome in 1996 and has since written extensively on this topic. He maintains several web sites, including www.consumerpsychologist.com, which is top ranked in major search engines under the terms “consumer psychology” and “consumer marketing,” as well as several autism web sites focusing on such issues as college preparation for people on the autism spectrum.

Autism Society - Board of Directors

Well dude i suggest you get used to it because it is my free will to do as such...

And no you are not contradicting me here..I clearly stated that ASA has one individual on their board of directors with Asperger's syndrome..in my previous post prior to the one in which i responded to you..

You specifically stated as documented above..that all disability organizations are started by individuals with the disabilities.. not the parents.. except for Autism Speaks..

I provided the evidence that you are incorrect on this...

It is as simple as that my friend..

So if you care to carry on and respond to me.. carry on...

I will be waiting.

If not..fine...

Individuals doing the research maybe clueless. But the universities that hire them are well aware of the not only the money Autism Speaks gives them, but of the power and high esteem they are held in in the highest corridors of power. They can help decide what papers get publicized and what does not.

The universities are less involved in the research funding than the researchers, who apply for their own funding. In research, autism speaks is not held in high regard or considered particularly powerful. The simons foundation is much more highly regarded and powerful.

Precisely...

Nice to hear from someone who truly understands what is going on..with Autism Research...

Autism Speaks per that last Inter-Agency Reporting Committee report only funds 4% of the research in the US..

The Simon's Foundation funds about 12%

And the government funds well over 80% of total funding for Autism Research...

Other than general Autism Awareness Efforts..and the actual documented positive benefits to some people on the spectrum..including lobbying efforts for insurance benefits for effective Autism therapy..per state by state....

Autism Research.. overall...would not even miss Autism Speaks if they dropped off the earth tomorrow.

Mr. Simon could just pitch in another 20M..and the state of Autism Research would be up to par..in an instant.

Not hard to do for a Billionaire..who cares....

Yes... Mr. Simon is a great man..he also funds a mathematics institute as well....

He's definitely on top of the game....

Of many efforts...many not mentioned here....at the moment.

Last edited by aghogday on 10 Jan 2014, 10:52 pm, edited 3 times in total.

That's what I'm doing now. It's verry merry berry eggsiting!

Wow!..i bet it is..

If i was a young one like you..i might make a merry berry stab at it2..my friend!

So either they are so great for funding research to that is helping to find a cure or their funding for research is relatively meaningless. Which is it? It can't be both.

If their funding for research is relatively meaningless, and only there campaigns matter then in my view there is relatively little positive about them and some of the negatives border on evil.

If the government is the big funder and Autism Speaks has huge gravities in the government that would make Autism Speaks influence a lot greater then the percentage of research they fund, no?.

I sure hope you are right that Autism Speaks is not held in high regard by researchers.

They do what they can friend..like everyone in life...

They do not have the resources to compete any greater in the real world to fund research.

Perhaps the most outstanding thing the organization..has done..per the influence of the founder..Mr. Wright..is the lobbying efforts to get real effective therapies...covered by insurance in many states...

What this means now.. is many people have been able to avoid losing their finances and homes..to instead be insured with coverage for their children that must have this therapy for serious issues such as self injury...

Well.. whether or not that helps you OR not as a human being and whether or not you have any feelings at all for the people who have avoided financial catastrophe in life..those folks simply love Autism Speaks..for obvious good reason...

Life IS long dude...you WILL FIND YOURSELF IN MANY OTHER SHOES..BEFORE YOU CHECK OUT OF THIS LIFE..

TRUST ME ON THAT ONE..

AND THEN YOU MAY HAVE A LITTLE MORE COGNITIVE EMPATHY TO UNDERSTAND THE FULLER PICTURE OF THIS ENTIRE SITUATION..

not just a little complaint here or there..cause someone got butt hurt over some words they did not like.. that were said...here or there...or wherever...

There are big bears to fight in life..

And there are feathers that can be avoided..

This is a feather friend..not a friggin bear....

In the bigger picture of life...

And of course all of this is just my opinion..take it with a grain of salt..your will not mine.

"real effective therapies"...what therapies? making someone on the spectrum become NT? you think we can overcome our autism?

ABA is the only effective therapy that scientific research shows is effective in SOME CASES..PARTICULARLY SERIOUS ISSUES SUCH AS SELF INJURY...

ABA IS AN EXCELLENT THERAPY..and similar versions of IT..basically behavior modification..are used almost everywhere in modern culture..from cognitive behavioral therapy..to situation where positive..negative..or intermittent reinforcement is used to advance what is observed as positive behaviors...or reduce what is observed as negative behaviors....

Actually at 53..my wife and i have been seeing a marriage counselor..as although we have been married for almost 24 years..it ain't been no easy ride with the autism spectrum disorder..and relating emotions...with language.

But i also have some serious issues with ADHD...

When i'm writing .. anything she says goes in one ear and out the other...

So when she makes me breakfast and such as that..she gets pissed as hell if i ignore her..and do not go to eat ..who knows.. i could go for an hour and not realize how much time goes by...

Well our therapist..who was a certified ABA therapist for autistic children..before she became a marriage counselor..

Decided to use some simple ABA on me...

She told my wife to put a sticky on the computer to say please come eat now...

And it works like a charm...

While it might seem like common sense..it never crossed my mind..but the therapist understands the executive functioning issues for someone like me that has three college degrees..and is a retired GS11 equivalent government employee..

but can't remember to eat my friggin breakfast..when my wife says it's ready..unless i have a sticky right in front of my face...

This is a very simple example of ABA friend....

But there are almost infinite other examples that help people in all walks of life per simple behavior modification techniques..to get friggin common sense stuff done...

And by the way..my personal adaptations to my Autism Spectrum Disorder have been extremely effective in real life..in the social arena..

My main issue was with motor coordination..before..and motor coordination affects everything from walking to non-verbal communication..that comprises about 93% of normal human reciprocal social interaction...

All i can say ..is something clicked epigenetically and with neuroplasticity both for my mind and body...

Because i started a walking in reverse program last summer that has landed me now in a place.. as what some people described as Zen Master or elite special ops.. now..per my martial arts abilities with a form of TAI CHI..that most people do not even attempt in the US..that cycles forward and reverse walking..extremely slow or extremely fast..floating like a butterfly..in balancing the body..to minimize the effect of gravity...

Along with that came an extreme ability in non-verbal communication..that i never had before..It was completely natural..i didn't even have a to think about it..as every minute social interaction..took all my concentration..for nearly 5 decades before that...

Well after scoring a 44 to 45 on the Autism Quotient test..just last July..and 195 on the Aspie Quiz...

i score an 11 on the Autism Quotient test now...

So in some ways i have remediated the most troublesome issues in reciprocal social communication per non-verbal communication...

And per the modern definition.. of Cure.. per remediation of symptoms of a disorder and/or disease...

One might say i've cured my autism..but of course it is considered a life long disorder..so i am still officially diagnosed with Autism Spectrum disorder...through professional diagnosis...

There are many ways to adapt to Autism Spectrum disorder..but for some folks like me..it can take over 5 decades..to be almost fully successful at it...

OH and by the way ..i've been meaning to take the Aspie quiz again...to see how i score vs. the 195 last Summer before July...

And well..now i score a 92...

So maybe Autism Speaks needs to consult me on how to cure..IT..

haha...hehe...that's kinda funny....

But i
m different that way...

i've been finding out of the box solutions..to complicated stuff..all my life..where no else thinks about it...

Kinda like Forest Gump..including doing stuff..like dance walking in the Mall on December 21st...for a solid 23 miles..

No one has ever done a dance-walk marathon in a mall..anywhere that is documented like mine..per NIKE GPS PLUS watch...

And that's at age 53 friend..i've been doing stuff like that all my life..whether it is beating all the football players at arm wrestling when i was 5 foot 10 and weighing 120 pounds at age 13.. skin and bones and all of that..

Or doing over a thousand flight of stairs..on a stair machine when it first came out...

iF only i could get the easy stuff..like eating breakfast...

But anyway..even if i did cure the reciprocal social communication issues associated with Autism...for ME.

Ain't no one anywhere that thinks i am anything like normal...

or f*****g so called NT